The Agony and the Ecstacy of Parenting a Child with Intensive Needs
by Dick Sobsey
This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. To read more: http://networkedblogs.com/NMw4h
An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.
Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.
Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.
The Importance of Being Innocenct: Why We Worry About Children
Joanne Faulkner’s recently published book on childhood, The Importance of Being Innocent, was the topic of an Australian Broadcasting Corporation talk show segment today. You can here the interview here; here is the url directly:
Dr. Faulkner is a member of the Living Archives on Eugenics in Western Canada team. She is currently a postdoctoral fellow in philosophy at the University of New South Wales, and formerly held a Killam Postdoctoral Fellowship at the University of Alberta.
This post is intended mostly for parents of children (including adult children) with disabilities and other family members in their families. There is a new web-based discussion group called the Sustainable Family Care Forum that is part of research project that examines how families balance the demands of work and other life challenges with their roles and responsibilities of raising children with disabilities. If you are a parent or family member who might be interested in taking part, please take a look at the forum and consider joining in. If you know of others who might be interested, please pass on this information to them. Thanks!
I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.
1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.
2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses. Continue reading →
Yesterday, the CBC ran the story Forbidden Love, on sexual feelings between genetically-related individuals, including mothers and sons, brothers and sisters, who have been separated from very early in life and reunited as adults. (thanks to Matti for keeping me up to speed.) Over the last month or so, during my day job I have been focused on stuff on incest and incest avoidance, in part through reading and reviewing Bernard Chapais’s recent book Primeval Kinship: How Pair-Bonding Gave Birth to Human Society (Oxford 2008), and through trying to figure out just what it was that Edward Westermarck was meant to have hypothesized about childhood associations, just over 100 years ago. And I’ve been thinking about posting on this at What Sorts. So let’s start with the Forbidden Love story from the CBC site, which begins as follows:
Two weeks after Sally reunited with her biological son, she began to have sexual feelings for him. “This is feeling really bizarre, but I think I’m falling in love with this person,” she recalls thinking. Sally, whose name has been changed to protect her identity, had given up her son for adoption when she was 16, but vowed as she cradled the little boy swaddled in a blanket that she would someday, somehow become part of his life again. She never imagined that their reunion some 30 years later would lead to a sexual relationship.
After their first meeting, the two found themselves spending more and more time together. “We kind of gave ourselves permission to do more hugging,” said Sally in an interview with CBC’s The Current. Eventually, it progressed into a sexual relationship.
“I do remember the night we did and it was amazing … the most amazing thing I’ve ever experienced,” Sally says. “He said, ‘I’ve finally found the most perfect person in the world for me in every way and she turned out to be my mother.'”
Sally’s not alone in feeling a deep attraction to a blood relative upon meeting as adults for the first time. Read the full story at CBC’s website. There are also audio files from CBC’s The Current with interviews with Sally and others. I’ll blog on this in the next few days, and follow up with other posts as the will wills.
On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north. Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson. This event was video recorded and over the next month we will highlight these videos on this blog. Videos will be featured on average twice a week, roughly every Saturday and Wednesday.
To download the full description of the symposium please click here.
We begin this series with the first two parts of the presentation by Dick Sobsey titled “Varieties of Eugenics Experience in the 21st Century.” This presentation amounts to a summary of various kinds of eugenic motivations, justifications, and practices from the 19th century to today with a good collection of anecdotes and trivia. A transcript of both parts follows the fold.
Highlights from part 1 include: shift from religious to scientific view of the world; quality of life; social Darwinism vs. biological capitalism.
Randall Gordon, a character from Paul Chadwick's Concrete series, points his finger at YOU, a la Uncle Sam, with the following speech bubble: "I'm completely serious, and I repeat my appeal. You, out there. Somewhere. Sexually transmitted; no undue harm; infertility. Go save the world."
And so a tale already fraught with controversy unleashes an ethical bombshell… Continue reading →
[This is the tenth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here.]
Here Michael Shaw draws on his dual experience as a child in a medical family and as a parent of a child with Down Syndrome, and as a parent advocate working with the Canadian Down Syndrome Society to ask a question about how doctors and others often fail to connect with the concerns of parents of children with disabilities. The video is in two parts; Part 2 beneath the fold, with transcripts for both videos there (thanks to Jackie Ostrem!). A response from Dick in Part 1, and responses from Sam and Wendy in Part 2. If you have trouble listening to or viewing the videos here, you can also listen to or view them directly at Youtube: Part 1 and Part 2.
[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]
The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”
Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold. Continue reading →
We’ve been under the cone of silence over the many propositions passed as part of the US election season. But this one pretty much speaks for itself (though apologies that I have not found a version of this that is captioned–if anyone knows of one, let me know and I’ll link to that version.)
CUP Banner: CUP Symbol on the left (Blue half-circle opening upwards on the left with a black dot inside with the letters CUP underneath) and the words "Community-University Partnership for the Study of Children, Youth, and Families" on the right. The background is a faded close-up of flowers.
The University of Alberta is offering two community based research related events that may be of interest to those who are part of the What Sorts Community. Why? Much of the research that our members participate in is directly related to the experiences of actual people in actual communities and one of our major non-research related goals is strengthening ties between universities and the people and organizations that exist around them.
Please note that registration deadlines for the following events are close at hand!Continue reading →
. A Free Public Symposium on Eugenics and Family Life:
Past, Present & Future .
Friday, October 24, 2008, 8:30 am – 4:00pm
Edmonton Public Library, Stanley Milner Branch (Downtown)
This FREE PUBLIC SYMPOSIUM will centre on the stories and experiences of survivors of sterilization, institutionalization, and other aspects of our social structure that have excluded persons with real or perceived disabilities from family life
Planning on attending? Enrollment is limited! Please tell us!
Cover of Granta 102, The New Nature Writing, showing a person in a semi-cleared field
I am a long-time Granta subscriber, and it remains one of the most informative and fun things I read on a regular basis. For those not in the know, Granta is “the magazine of new writing”, published out of the UK, and it published issues 100-102 under the new editorship of Jason Crowley this year. It includes fiction and poetry, but also essays, autobiography, photo essays, and other forms of writing. Two things about it that might be of interest to readers of this blog.
The first is that under Crowley’s short-lived editorship (he has now moved on, or perhaps back, to The New Statesman), Granta now has a significant online component, much of which is free. You can go there and check out interviews with authors, weekly updates on relevant stories, recent events, and much more. Some of this complements the printed version, but much of it is free-standing and so of use to those who don’t subscribe to or otherwise read Granta. Two on-line items worth checking out are Continue reading →
The idea of a child who has grown largely without human contact or care is of interest to academics for a variety of reasons, whether the interest stems from questions about child development, or the nature/nurture problem. But I agree with jj in this post from Feminist Philosophers that the reality of “the feral child” is far from being the distant object of theoretical curiosity that it is often speculated as in classroom discussion.
Dani with her new family
This journalistic report on the story on Dani, a child who went largely without human contact until she was seven, does a remarkably good job of treating her as a person, rather than an object of medical intrigue. Dani was diagnosed with a kind of environmental autism due to this neglect. Included is an audio version of the story and a slide show, as well as links to other stories on Dani and a place for feedback.